That makes sense but it doesn't help those who need it.
Is there a liquid form of A available? Never mind, I found several on Amazon...maybe using those in conjunction with the capsules might help?
Are these lab test necessary?
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Is there a liquid form of A available? Never mind, I found several on Amazon...maybe using those in conjunction with the capsules might help?
Marquis Mark
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It's still frightening that there's ONLY one supplier in the world and if they don't have it (or decide it's not profitable enough to make) you can lose your vision.
I take 75K/day and it just maintains my A level. If I were you, I'd start taking 200K/day in divided doses. You're obviously not absorbing it as well as most of us, but, presuming you're absorbing even a tiny amount, the increase to 200K would help. I don't see an alternative at this point and there's little risk of going over with your A level so low. You might try a couple of different brands of dry A, too, just in case.
Hang in there...
Mark
I take 75K/day and it just maintains my A level. If I were you, I'd start taking 200K/day in divided doses. You're obviously not absorbing it as well as most of us, but, presuming you're absorbing even a tiny amount, the increase to 200K would help. I don't see an alternative at this point and there's little risk of going over with your A level so low. You might try a couple of different brands of dry A, too, just in case.
Hang in there...
Mark
Settledownnow
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Thanks for the comments and support.
I am taking about 150K of Biotech A daily plus 1-2 sublingual Vit A 10K (acetate) tabs I found (taste is awful). I take the biotech Vit A first thing in the morning on an empty stomach, during the day I get in in a few of doses, and then I take another Vit A before bed. If I wake up in the middle of the night, I take another! It seems to be working because my eyes are a little better -- less pain and I can see better. The eye doc thought my eyes appeared better as well. I will be retesting in a couple of weeks to check my levels.
southernlady I rejected the idea of taking the Vit A drops in favor of the sublingual because the drops are suspended in oil. However, I did read that some DS'ers are able to get their Vit D levels up through a combination of high doses of dry D and additional oil based capsules so maybe it is worth a try.
I am taking about 150K of Biotech A daily plus 1-2 sublingual Vit A 10K (acetate) tabs I found (taste is awful). I take the biotech Vit A first thing in the morning on an empty stomach, during the day I get in in a few of doses, and then I take another Vit A before bed. If I wake up in the middle of the night, I take another! It seems to be working because my eyes are a little better -- less pain and I can see better. The eye doc thought my eyes appeared better as well. I will be retesting in a couple of weeks to check my levels.
southernlady I rejected the idea of taking the Vit A drops in favor of the sublingual because the drops are suspended in oil. However, I did read that some DS'ers are able to get their Vit D levels up through a combination of high doses of dry D and additional oil based capsules so maybe it is worth a try.
Marquis Mark
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Sounds good. Obviously all of us absorb different supplements at different rates. In my case, I have terrible copper absorption. I need 40 mg a day just to keep it from dropping. It took me a long time to not get hung up on the number, but if it's not showing up in your lab you're pooping it out and need to keep increasing until you get a response a-- and you may need much, much more than you ever imagined!
Looking forward to a positive lab result!
Marquis Mark
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Did you ever get your Vitamin A issue resolved? If so, what did it?
Settledownnow
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No, the injectable Vit A is still not available! I have been taking 150K dry Vit A daily and my eyes feel better (less painful, seeing better) but I have not rechecked my labs.
How is your copper doing? Hanging in there after the iv?
Marquis Mark
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Hanging in, but nervous. I had three sets of infusions (11 infusions total) and they did NOTHING to increase the copper or ceruloplasmin. My ceruloplasmin is now 11 (normal 20-50) and my copper is 47 (normal 70-140). Prior to the DS (2.5 years ago) they were 20 and 77 respectively. They sent me to a neurologist, but he didn't have any answers, either. Basically, there doesn't seem to be any person who specializes in this. Right now, I still feel OK, but if the downtrend continues, copper deficiency leads to nephropathy, loss of balance, etc. etc.
I can deal with an issue if I know there's a solution, but when doctors don't have a clue it's pretty nerve-wracking. Anyway, I know how you feel. Hopefully you're next labs will show the A improved.
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